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New to site & need support

Over the last several months, my HCP’s have diagnosed me with Mild Cognitive Impairment, Parkinson’s Disease, and/or Vascular Dementia/AD. I’m cognizant all these overlap within the domain of neurodegenerative disorders.

Treatment for PD with levodopa/carbidopa has significantly improved my leg spasticity and ataxia but has done nothing for my inability to cognitively process information and often I am unable to put my thoughts into words. My geriatrician prescribed Memantine 10mg bid although not sure that’s been of any benefit.

I live alone and manage ADLs without major difficulty but seem to be losing cognitive abilities quite rapidly. This is all new to me and although have read much in the science databases, remain totally discombobulated.

Thoughts. perspectives and suggestions?

Comments

  • marionwilhelm
    marionwilhelm Member Posts: 17
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    Gosh. You have a lot going on. It worries me that you live alone. Are there any options? Have you looked into care facilities or some home assistance? Any family?

    ❤️

  • GabbyB
    GabbyB Member Posts: 6
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    Good morning and thank you for your kind and empathetic remarks.I'm in SC and we had our first "snow" although it was really a very small amount. Nonetheless, I'm staying in where the fireplace takes the the edge off.

    From my perspective, there a two living options: (1) stay in my home and function independently although with minimal social interaction. I have good neighbors but the reality is they have their own families. (2) sell the house, sell almost most of my possessions and relocate into an independent senior apartment near downtown. That's an expensive array but does provide me with 3 meals a day and all utilities are provided. The downside is I could easily remain socially isolated and would then be left hanging…..

    Not wanting a pity-party but this is a sad commentary on my decisions throughout life. I still volunteer, take classes at the university and can drive although see a time coming…….how do people do it? No family, no kids……it's so overwhelming in some ways but in others, I adapt. Having someone to talk with is a game change but where does one go? Thus, thank you for reaching out. Coffee? Gregory

  • Watson1
    Watson1 Member Posts: 23
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    I have alzheimers an am on doneprozal for cognitive stability and it has helped greatly but most of all it is the staff of the memory clinic that has done my full assessment and sent me in the right direction. memory clinics have many highly trained staff to cover all the angles..

  • David1946
    David1946 Member Posts: 928
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    First snow 2 inches in Boston

  • GabbyB
    GabbyB Member Posts: 6
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    Thanks for the info and perhaps I'm missing a pieces of the puzzle within the fractured health care system. My memory care HCP put me on Memantine and then let me go. I'm functioning independently but really need a support system where ideas can be bounced around. Where are you finding "highly trained staff" to cover all the angles…..sounds like my answer!

  • LBC83
    LBC83 Member Posts: 28
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    Member

    Sorry to hear about your diagnosis and your overall situation, it must be very difficult. Have you thought about contacting the Alzheimer's Association of SC? Per their website, they have offices in Charlotte, Greenville, Mt Pleasant, and Columbia. The website includes phone numbers for these offices. They appear to offer support groups, where you might be able to get some answers to your questions about dealing with this illness while living alone.

    Also, you might want to checkout the National Institute of Aging website on "Tips for Living Alone with Early-Stage Dementia". One of their tips is to contact the Eldercare Locator (800 phone number included at the link below). This nationwide service is from the Administration on Aging (part of the U.S. Department of Health and Human Services), they should be able to help you connect with local support resources.

    See links below for these two websites.

    https://www.nia.nih.gov/health/alzheimers-and-dementia/tips-living-alone-early-stage-dementia

  • GabbyB
    GabbyB Member Posts: 6
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    Thank you for your concern and support. The AA of SC provided me with this site which was very informative and also led to this Discussion Board. I had previously received a linkage to the NIA on "Tips" and have adapted many into my living spaces. What I need is a larger support system where questions can be asked and help with decisions can be made. I know this is elementary but when reading "discard unused items" that is like a gut checker. It's my history, my memories……there are TED Talks on those very issues. It's difficult; there is my need to share the pains and the potential joys. How did someone handle discarding 90% of their "stuff" when moving into a independent living facility? Were they at all concerned the social isolation may actually increase? Doing this alone is the pits and recognizing once tossed, the pieces can't be picked up again. I'm a smart cookie but the overwhelming number of decisions and the subsequent effects makes decision-making almost an impossibility. I don't mean to whine or throw a pity-party but I'm frozen.

  • Iris L.
    Iris L. Member Posts: 4,541
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    Member

    Welcome Gaby. I have been living with significant memory loss and a diagnosis of cognitive impairment nos for several years. I know all about living alone with memory loss with no support in real life. My support has come from the members here on these message boards. I have found that most professionals who claim to work with older adults have limited advice for someone in my situation. As far as discarding items, yes, like you, it was hard for me to give up my cocoon of belongings. But all of this stuff is in my way! What is helping me is changing my perspective. I've learned from my family members and from members here.

    There is so much that I could tell you about living alone with memory loss. It's a rough ride but I'm dealing with it.

    Iris

  • LBC83
    LBC83 Member Posts: 28
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    GabbyB
    I'm an Engineer by training, diagnosed with MCI last year. I'm taking Leqembi to slow down the progression. I'm married and have a supportive family structure, so I can't directly relate to your situation. But I do have some suggestions.

    In my previous line of work, I helped perform analytical assessments of complex engineering systems. We sometimes noted we would get stuck in what we would refer to as "Analysis Paralysis". We could always find issues and concerns with weak points in our analytical model, and spend countless hours trying to gather data and develop algorithms to improve our model to better predict reality. Over the years, we learned that at some point, we had to declare "pencils down", time to make a decision and execute, rather than continually debating and analyzing alternatives.

    Perhaps something similar may apply to your situation.

    My Mom also had dementia. After my Dad died, she lived alone in her home. She had no desire to move, given her decades in the house, with all the memories and the familiarity of it all. But eventually, we convinced her to move into an assisted living apartment. We visited several establishments, and she helped picked out the place. At that point in time, my Mom didn't really need any "assistance" for daily living. I believe she did much better at the assisted living facility than she did at home. The meal times were a big social event, instead of eating alone at her home. I would sometimes join my Mom for lunch at her table with several other residents. The conversations were always robust and interesting. My Mom also enjoyed the activities they had, such as a big annual Christmas party with a large buffet of various foods, musical presentations by local school choirs, various opportunities for crafts. The facility was within easy walking distance of an ice cream store, and in my regular visits with my Mom, we would go and get some ice cream. Then Covid hit, and later my Mom fell and broke her hip, such that she couldn't return to the assisted living facility. Her mental decline also increased, and we had to admit her to a memory care unit.

    Back to your situation, perhaps you could try asking at the "independent senior apartment building near downtown" if they have programs which you could attend to get a feel for what it might be like to live in that community. In my area, across the street from the church I attend there is an independent senior apartment building. Our church has conducted many joint programs with the owners of the building, and we have become familiar with how they operate. They have staff members who help organize social events for the residents, trying to help ensure nobody is socially isolated. Or perhaps it is more accurate to say that any who are socially isolated are in that situation because they chose not to participate in any of the social activities. I am generally an introvert, so in this situation, I would need to force myself to get out of my apartment and go to the social activities in an attempt to maintain some sanity.

    As far as getting rid of many cherished items, my wife and I have been doing that as we downsize from our 3-bedroom home to a smaller condo we purchased in a building in another city where my wife's sister also owns a unit. It isn't easy, as many items have specific memories. We also have many printed genealogical records, some which my wife inherited from her Dad, and many which I've accumulated over the decades from my side of the family. I've been trying to migrate some of this material to a website, such that the historical information may live on after I am long gone.

    I hope something in this lengthy post may help.

  • GabbyB
    GabbyB Member Posts: 6
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    Member

    Stand to reason that an engineer could pull this altogether systemically derive an Analysis Paralysis dx. Tip-of-the-hat to you! Perhaps I could execute a decision although unsure the information needed is available or accurate. Someone besides me  should be looking at data points and weighing predictabilities. 

    That said and to my knowledge, there is only one independent senior apartment in town where people are “active” outside the complex and while some social activities exist, the primary focus is engagement with clients from within the building. I still like to hike (in a group), take classes and stretch my cognitive limits and without that network my downfall would be imminent. 

    Social functions are nearby and that’s my motivation in chasing this option. It’s still a big step! Being aware of the multiplicity to inputs and cognizant that one poor decision could cascade what aspirations are still out there, the “pause button” has been hit and am now waiting for The Epiphany. Having read your correspondence three times, each word is significant and very much appreciated. Thank you!

  • GabbyB
    GabbyB Member Posts: 6
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    Member

    Care to share how and where members of this group have facilitated your support system? How do you live with the roller-coaster of "memory loss?" I was at Costco today and froze several times in the place - like a deer in the headlights of an oncoming car. Fortunately, people were very nice and helped me orient myself.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more